Survey reveals many people are misdiagnosed and
live in uncertainty for years before MS diagnosis
· 1 in 4 people with MS misdiagnosed with having a trapped nerve
· 1 in 10 people with MS told they’d had a stroke
· 39% of people with MS left waiting a year or more for diagnosis
The survey of over 1,500 people with MS in the UK found that 81% had been misdiagnosed by their GP; more than a quarter were told they had a trapped nerve (28%) and about 1 in 10 people were misdiagnosed with depression or anxiety or stress (14%) or told they’d suffered a stroke (11%).
There are over 100,000 people living with MS in the UK – 5,000 are newly diagnosed every year. It is the most common disabling neurological condition in young adults with symptoms usually starting in the 20s and 30s, yet awareness remains low.
1 in 5 (20%) people had to wait between 1 and 3 years for a diagnosis following their first visit to their GP with early MS symptoms. 1 in 4 people (25%) visited their GP over four times before they were referred to a neurologist for further examination. While MS can be difficult to diagnose, delays such as these can be harmful; they prevent people from taking the necessary steps to manage their condition effectively and there is evidence that early treatment has long-term benefits.
Michelle Mitchell, Chief Executive at the MS Society said: “Our findings highlight the struggle people go through for years before they get an MS diagnosis. Being misdiagnosed or experiencing symptoms that can’t be explained can put a considerable strain on people’s emotions and health. A fast, accurate diagnosis enables people to take steps to begin to manage their condition, access treatment and take greater control of their lives again.
“People often experience symptoms which interfere with daily life whilst in their prime, when families and careers are developing. While we are aware that MS is a complex condition that isn’t easy to diagnose, we don’t want thousands of people to be left in ‘limbo’ suffering needlessly.
“It’s important for GPs to recognise the warning signs and refer people promptly to a consultant neurologist who can then make an accurate diagnosis. Most people who experience MS-like symptoms won’t have the condition but if you’re concerned for any reason your GP should still be your first port of call.”
Professor Alan Thompson, Consultant Neurologist at the National Hospital for Neurology and Dean of the UCL Faculty of Brain Sciences, said: “I’ve seen a number of people in my clinic who have never heard of MS so it doesn’t surprise me that 1 in 3 people in the survey say they didn’t know what it was before diagnosis. Early symptoms of MS can fluctuate and can be attributed to a number of other things, which is why awareness of the condition is so crucial – both for GP’s and the general public.
“We’ve moved on so much in terms of the treatments that are available to slow the long term damage that relapsing forms of MS cause, so a prompt and accurate diagnosis of MS can make an enormous difference. It is only once someone is diagnosed that they can begin to understand and manage their condition.”
Out of the 1,515 people surveyed, the most common early symptoms of MS were reported as being:
· Numbness and altered sensations in different parts of body (tingling/pins and needles) – 53% (800 people)
· Difficulties with walking – 41% (623 people)
· Eye and vision problems – 47% (709 people)
· Fatigue – 38% (570)
· Problems with balance and coordination – 35% (531)
· Muscle weakness – 31% (473)
· Muscle stiffness and spasms – 20% (306)
World MS Day is the only global awareness raising campaign for MS. Every year, it brings the community together to provide the public with information about MS and how it affects the lives of more than two million people around the world.
The MS Society is the UK’s leading MS charity for people living with MS in the UK. It is funding research and fighting to improve treatment and care to help people with the condition take control of their lives.
- For more information about MS visit: www.mssociety.org.uk
- The MS Society has played a pivotal role by investing over £150 million in MS research to date which has led to major advances in treatment development
- The MS Society launched the Treat Me Right campaign in April 2014 to call for the right treatment at the right time for people with MS. For further information visit www.treatmerightms.org.uk